So today we sat down with the doctors that are running the drug trial at Memorial Sloan-Kettering Hospital. Just to give you a better idea of how amazing it is that we even got this far, this is the only trial of this drug being conducted in the United States right now. There are about a dozen other countries running studies on it, but this is the only one here in this country. So the fact that we are close enough and were able to get up to see these folks is just awesome.
The team here confirmed what our previous two pathology reports already told us, which is that my tumor is lacking a particular gene. It's a fairly rare genetic deficiency overall, but common enough that they were able to develop this medication for it. To explain it in the terms they gave us today, the missing gene basically causes other genes to go a little nutty and thus cause my cells to replicate out of control (which is really all cancer is, when you get down to it- cells that are over-replicating). So traditional chemo treatments work in various ways by stopping cells from replicating. Since cancer cells replicate faster than normal cells, the drugs and the cycles they use them in are designed to kill more cancer cells than normal cells, in order to shrink the tumor without killing the patient. But, they do still destroy a lot of good cells, which is why chemo makes you sick. This new drug that the trial is studying doesn't do that. It goes in to the gap in the DNA made by this missing gene, and basically plugs the hole. This makes the DNA look at the cell and go oh, you're not supposed to be a rapidly multiplying psycho-cell, you're just supposed to be a lung cell. And so the cells stop over-replicating, and therefore stop making cancer, and the existing cancer cells die off, and no new ones will be made.
The leading doctor, Dr Gounder, who we saw today, said that most patients see results with this drug, and that they mostly see very good results. At the very low end of "good" results would be everything freezing where it is now, and the cancer not spreading ever again. The even more likely good result would be that the existing tumors start shrinking and continue to shrink as long as the treatment lasts. This is a treatment which unlike chemo, I can continue to take for an indefinite period of time. Even more amazing, Dr Gounder told us that while there are some mild side effects listed on the drug's information, NONE of his patients are currently reporting ANY side effects from this drug. He said if he really pushes them, he'll get half-hearted reports of maybe a little fatigue here or there, but that nobody is reporting any major or debilitating side effects. That means no nausea, no hair loss, no loss of taste or appetite... there's a good chance I won't even be able to tell I'm taking anything at all. Anyone who's been treated for cancer knows just how unbelievable that is.
So to get back to our meetings today, they went very well. We signed the trial consent forms, which was a big thing. It basically puts a bookmark on one of the trial spots for us. What happens now is that both Ty and I, and also the trial doctors, both have to petition our health insurance company for permission to get testing and treatment done at this hospital. Because it's out of state, we don't get automatic approval. We have to show them that because my cancer is rare and this is the only drug trial in the country being done for this particular cancer, that there is a reason why I have to get treated at this hospital and not one that's closer to us and in their regular network. Once we get clearance from the insurance company, I have to come back to NYC so they can do their tests- they mentioned blood work, possibly a genetic test (to see if the abnormalities in my tumor are in my entire body, or just in the tumor itself), and probably a PET & CT scan, to fully document where the tumors are and how big they are before we start. Also a few basic health assessments to makes ure that I'm healthy enough to start the study, but that's not really a big concern, because we already know that except for the cancer, I'm in good overall health. After I start the treatment, I'll have to come up every 2 weeks for the first 2-3 months, and then it will go down to once a month. It sounds like the trial sponsors will actually help me pay for travel and lodging costs, which is awesome. And between them and the insurance, they'll cover all the tests and everything.
As of now, it looks like the insurance is the big obstacle we have to get over. Once that's done, they'll bring me up, do the tests, and then give me final approval to enter the study and start the drug. It's likely that I'll have to do one more round of chemo, because by the time we get the approval, and then get me up here for the scans and tests, and then actually start me on the drug, it may be too long to wait from my last chemo. I've already emailed Dr Kang at Hopkins and am waiting to hear what he has to say about that. Other good news, I can continue to receive the bone-strengthening treatments even after I start the trial drug, so I will be able to continue my riding without interruption.
Sorry for such a long entry, but I wanted to get all the information out to you guys. So now you pretty much know everything that we know. :-) Which is basically that while we're not 100% in the trial yet, it looks really really good that we will be very soon.
We're heading home tomorrow! As always, thanks for the thoughts and prayers. <3
